Beyond the Pale: Folklore, family and the mystery of our hidden genes

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In Beyond the Pale, Emily Urquhart’s story begins on St. Stephen’s Day, 2010, in St. John’s, Newfoundland when she gives birth to a baby girl named Sadie Jane with a shock of snow-white hair. Within 3 months Sadie is diagnosed with albinism, a rare genetic disorder where pigment fails to form in the skin, hair and eyes, with accompanying maladies such as photophobia and partial blindness.

Emily is drawn to understanding her child’s differences by researching the cultural beliefs associated with albinism worldwide; a journey that takes her to a faraway continent, through her own family tree, and all the while unearthing discoveries that vacillate between beauty, amazement and horror.

Beyond the Pale is a heartfelt and enlightening new work for fans of Far From the Tree by Andrew Solomon, Rebecca Skloot’s The Immortal Life of Henrietta Lacks, Rebecca Solnit’s The Faraway Nearby and Through the Children’s Gate (Adam Gopnik).

‘An extremely necessary and moving book examining our human need to explain where it is we come from: the stories and tales we tell each other to bring communities together, and the ones we tell to tear them apart. From folklore to family, from genetics to hearsay, Emily Urquhart’s Beyond the Pale is one of the most powerful non-fiction books I’ve ever read. Read it and buy copies for everyone you know.’– Jen Campbell, author of The Bookshop Book

My wee girl was born with white hair and is albinism just the same as your wee girl and av read websites about it and ur book seams 2 have a better understanding of the condition ma wee girl is 17wks in 2days old

Meet the author

Emily Urquhart, a writer and folklorist, grew up in a small town in southwestern Ontario and has lived in Nice, Dublin, Edinburgh, Toronto, Vancouver and Kyiv, among other places. She has a doctorate in folklore from Memorial University of Newfoundland …

Reviews

‘Beyond the Pale is a powerful story about maternal love, the long reach of family and the ways — good and evil – we react to disability.’
– Katherine Ashenburg, author of The Dirt on Clean: An Unsanitized History

‘Beyond the Pale is a brave, thoughtful, clear, and always graceful journey through the terrifying randomness of genetics and the unexpected ways genetic anomalies can mark not just children, but all the lives around them. Best of all, it ends with a surprise—one that will interest anyone thinking of having a family.’
– Ian Brown, author of The Boy in the Moon: A father’s search for his disabled son